Taking patient reported outcomes centre stage in cancer research – why has it taken so long?
Tóm tắt
Roger Wilson challenged cancer professionals in research and care to place the patient perspective and patient reported outcome measures centre stage. The ability to collect information from patients using structured questionnaires (known as Patient Reported Outcome Measures or PROMs) which ask about clinical issues (such as disease symptoms or treatment side-effects) as well as social, emotional and psychological issues has existed for 40 years. They provide a powerful way of working out whether an aspect of diagnosis or treatment for cancer is bringing real benefits to patients that can be measured using these structured questionnaires. When they are used, studies and cancer service developments are clearly constrained to focus on what matters to patients rather than, perhaps what matters to health service professionals or recent exciting but perhaps relatively unproven new technologies. There is good evidence that PROMs can contribute valuable inputs into the results of randomised controlled trials, clinical consultations and surveys of whole populations even at a national level. However, there is a great deal more work to be done on methodology and perhaps to change attitudes and cultures within the healthcare professions before they can deliver all of their potential to bring benefits to cancer patients. In response to Roger Wilson’s challenge to place a patient-centred approach using Patient Reported Outcome Measures (PROMs) across all of the patient pathway, we have summarised progress over 40 years. We have critically evaluated what has been achieved to use patient reported outcomes in randomised controlled trials, in routine clinical practice and in population surveys. We conclude that there has been substantial scientific progress but that it has, arguably, been relatively slow. Barriers to placing PROMs centre stage in all of these areas of activity remain in methodology and to a degree in professional attitudes and culture. Active research programmes on methodology and closer working between healthcare professionals, cancer patients and patient advocates are the key requirements to speed up the use and application of PROMs and which should bring benefits to cancer patients and healthcare services.
Tài liệu tham khảo
Lawler M, Banks M, Law K, et al. The European Cancer Patient’s Bill of Rights, update and implementation 2016. ESMO Open Jan. 2017;1(6):e000127.
Priestman TJ, Baum M. Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet. 1976;1(7965):899–900.
Selby P, Chapman JA, Etazadi-Amoli J, et al. The development of a method for assessing the quality of life of cancer patients. Br J Cancer. 1984l;50(1):13–22.
Aaronson NK, Ahmedzai S, Bergman B, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76.
Cella DF, Tulsky DS, Gray G, et al. The functional assessment of Cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.
Gilbert A, Selby P, Velikova G. Monitoring of symptoms, toxicity and functioning using patient reported outcome measures (PROMs). In: Velikova G, Fallowfield L, Younger J, Board R, Selby P, editors. Problem solving in patient-Centred and integrated Cancer care. Oxford: EBN Health; 2018.
Donovan JL, Hamdy FC, Lane JA, et al. ProtecT study group. Patient-reported outcomes after monitoring, surgery, or radiotherapy for prostate Cancer. N Engl J Med. 2016;375(15):1425–37.
Efficace F, Jacobs M, Pusic A, et al. Patient-reported outcomes in randomised controlled trials of gynaecological cancers: investigating methodological quality and impact on clinical decision-making. Eur J Cancer. 2014;50(11):1925–41.
Jensen RE, Snyder CF, Abernethy AP, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215–22.
Kotronoulas G, Kearney N, Maguire R, et al. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol. 2014;32(14):1480–501.
Basch E, Deal AM, Dueck AC, et al. Overall survival results of a trial assessing patient-reported outcomes for symptom monitoring during routine Cancer treatment. JAMA. 2017;318(2):197–8.
Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine Cancer treatment: a randomized controlled trial. J Clin Oncol. 2016 Feb 20;34(6):557–65.
Department of Health (2008). High quality care for all. NHS next stage review final report. Available from www.gov.uk/government/uploads/system/uploads/attachment_data/file/228836/7432.pdf. Accessed 12 July 2018.
The Independent Cancer Taskforce (2015). Achieving world-class cancer outcomes: a strategy for England 2015–2020. Available from www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf. Accessed 12 July 2018.
Downing A, Wright P, Wagland R, et al. Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study. BMJ Open. 2016;6(12):e013555.
Glaser AW, Fraser LK, Corner J, et al. Patient-reported outcomes of cancer survivors in England 1-5 years after diagnosis: a cross-sectional survey. BMJ Open. 2013;3:e002317.
Butcher H, Selby P. Patient engagement and empowerment: key components of effective patient-centred care. In: Velikova G, Fallowfield L, Younger J, Board R, Selby P, editors. Problem solving in patient-Centred and integrated Cancer care. Oxford: EBN Health; 2018.
Selby P, Board R, Velikova G. In: Velikova G, Fallowfield L, Younger J, Board R, Selby P, editors. Patient-centred and integrated cancer care. Problem solving in patient-Centred and integrated Cancer care. Oxford: EBN Health; 2018.